She has a beautiful mind. Like a treasure chest waiting to burst open and reveal its magic.
Except we haven’t got a key to the chest yet. We aren’t sure a key exists, so we are working on making our own special, personalised key in order to reveal all of the wonder
Until we’ve worked that out though, I know that those closest to her understand. Each movement, sound, eye point, ALL communication. Amazing communication. Never take any of it for granted. A laugh or a smile is worth a thousand “I love you mummys”, a tap for “more” is worth 800 telling me about her days.
You see, my daughter is non verbal. And sometimes, I hate to admit; that’s not okay. Sometimes it isn’t anyway. Not to contradict the title… because it is okay… just sometimes, on rare occasions, it isn’t.
Allow me to elaborate. You know when you plod on everyday accepting everything and dealing with what CAN be done as opposed to grieving what can’t be? Well yes, sometimes I have an emotional wobble and suddenly all of it is not okay.
I think as she gets older it’s become more about adjusting our expectations and creating manageable goals.
At the start I had so many people tell me “she WILL do this, you just have to have hope”. It actually puts a lot of pressure on both the child and the parent.
It also implies that if she doesn’t ever do that thing.. that she has somehow failed or not tried hard enough.
That’s never the case. Ever.
I looked to other parents with older children for support, and did the unavoidable comparing and thinking “hey that might be us one day”.
Time has passed and I can see now that no, that isn’t us. “My son didn’t say a word until he was 3 then one day he just said “Hi mummy”. I waited secretly and patiently for months thinking maybe that would happen to us.
That one day, as if by magic, all muscular issues would vanish and she would say some words I had longed to hear.
I dream constantly that she speaks. I dream that she can eat too. Then I wake up half excited half confused to the eventual realisation that it wasn’t real.
It doesn’t matter. Most of the time it’s okay.
What caused my most recent wobble was being told that Amy wasn’t (yet?) a suitable candidate for eye gaze.
Of all the diagnoses and information I have had to digest over the years, this one was probably one of the most devastating. I had accepted already that verbal speech is likely not going to happen.
So I shifted my hopes on to eye gaze systems.
I’ve seen so many people utilise this amazing technology to communicate their needs, opinions and so on. It’s fantastic and it makes me so happy that it exists.
Anyone who meets Amy can see clearly that she is very alert, very social, very nosey, and has A LOT to say. Whilst visually impaired, she does have good vision. So naturally I had high hopes.
What I hadn’t really thought about was positioning. Amy finds it very hard to keep still and keep her head up. Head control is a big issue for her and she doesn’t like to be restrained.
During the eye gaze sessions she has successfully shown cause and effect skills. (example, looking at the stereo: it plays music. Look away: it stops)
Long story short, due to her vision and postural/movement issues, it isn’t appropriate, for the time being at least.
My hopes of being able to ask questions and get proper responses felt dashed. I could feel my optimism diminishing and a wave of grieve cast over me like dark storm clouds.
Instead we are continuing work with PODD symbols. It’s like an entirely different language. Already when I discuss Amy related things, so much of what we talk about sounds like a different language. The medical terminology, the equipment we use, everything.
We briefly visited PODD before with limited success.
Our main issue is that myself and Phil (daddy) understand Amy very well most of the time. We anticipate her needs very easily.
Certain sounds she makes, or things she looks at makes it easy for us to decipher what she might want. If she is upset we do the usual thing people would do with a baby, we change the nappy, we give paracetamol in case of teething, we wind her and so on.
So by process of elimination, and knowing our child incredibly well… we are now having to show her these symbols and try to get her to understand them.
I went through the sample booklet and actually cried. Until you have to explain these symbols to her, you realise that actually communication is a very difficult thing to teach.
So many things I take for granted. Does she understand now and next? Does she understand what a day of the week is? Does she understand that each column has different options and that she needs to pick the column that has the symbol she wants?
All of this combined with the fact she is struggling with seizures, has difficulty paying attention sometimes, finds it hard to stay still enough to focus, and we aren’t sure entirely how her cognition is.
Because it is so hard it is hard to bring yourself to do the work… but unless you do the work consistently… you don’t stand a chance! It’s a vicious circle, a catch 22, an option I so desperately want to work whilst simultaneously don’t know if it ever will.
Communication is my biggest wish for Amy.
I love how she waves to people when we are out and about. I love how she is getting really good at high fives (but will only give you them if you really deserve them and she’s in the right mood!).
I love how her face lights up if you say “Amy, shall we go and see grandma today?” or “Amy.. daddy’s home”, or “Amy, would you like to watch some videos?”.
She understands. Definitely. If I mention a favourite toy you will see her look for it. But what we need is a nod, or a shaking of the head. She needs to be able to make herself universally understood.
Mummy and daddy can’t always be there, much as they’d love to be.
The other thing that pains me is that she can’t ask questions. Everything that happens to her is a result of me bringing things to her, or taking things to her.
Children are naturally curious, it’s one of their most endearing qualities. Amy is curious… she’s always got her eyes on everything.
Seeking every opportunity for fun and exploration. But I wish she could say “mummy, can we go to the park today?” or even better, I wish she could tell me if her seizures are causing a headache, or if she has an itch on her back she can’t scratch.
She must get fed up of me sometimes. “Amy do you want me to take your splints off? Are your feet hot? Do you want to lie on your mats for a bit?”, sometimes I bet she just yearns for that independence and time to do things by herself with just herself without me constantly in her face.
I can fully understand why she sometimes lashes out and gets frustrated. I feel her frustration too. Then I feel guilty for also being frustrated.
I see a lot of people say that they are their child’s voice for them. I don’t feel that way. I am there to advocate for her yes.
But I am pretty certain that she has an entire mind of her own that the best parent in the world could never fully interpret without spoken word.
I don’t speak for my child. I do what I have to do to ensure the best care and quality of life for her.
She has her own voice, and we are fine tuning things and working with her everyday to make sure her voice is heard.
My child is non verbal, and that’s okay…. the majority of the time.
My child can communicate, you just need to learn how to listen in the way that she needs you to.
My child is not going to change, but the world can. If someone isn’t using words to talk to you… find other ways to listen. You might be surprised at what you can learn about the world, that person, and even yourself.
I’m not known for my patience. If something isn’t working, I want an instant fix.
We’ve been told already so many times “wait and see”. I don’t want to waste what little time we have, but at the same time we need to try these things.
I’d be interested to hear the communication journeys of other families on here.
What challenges you faced and how you overcame them.